Which advice would you give to someone who has just been diagnosed with Tarlov Cyst?

Don't take the word of all doctors as gospel. This disease is such that many doctors don't know how to treat it but will act as if they do. Search for your own answers as soon as you know what is wrong, and find a supportive doctor in the meantime. By best advice to those newly diagnosed is this: don't wait, and don't be afraid. When you know what it is, find a doctor and push to get answers. For my the leading physician in the field took too long, so I found another. When I was told surgery was an option, I practically threw myself on the table. I had seen and heard enough from other patients that fear of surgery had made them wait too long, and now recovery was much harder. Another point is that the symptoms tend to flare and go. When on the low end you, you will think it's fine and to just let it go. Each flare can get worse, and the cysts can even cause bone erosion even if you don't always feel it. Dont stop until the symptoms are unbearable, but be proactive for yourself. Finally, be brave and surround yourself with friends and family to help you float through the chaos.

2/26/17 by Amie 1250

I have had my diagnosis for several years now, and I know it is extremely tempting to want to jump right into surgery, but after all these years I am extremely glad I did not jump into it. I have seen several people who are much worse off after surgery, getting new cysts, or developing arachnoiditis, and the recovery time alone can be two years. Learn as much as you can about it and look at all of the options, talk to people like me who have managed without surgery and limited pain medication. It is possible to live like this, don't lose hope.

4/11/17 by Kelly 5450

Definitely do the research for what kind of medications might work for you. I am by no means a pill pusher, but lyrica has managed to help my back severely with the pain. By the end of the day i may still feel worn down but i can sleep more easily because i know i have gotten a decent amount of work done and i dont end up on the floor buckled from pain. I can also manage to sleep through the night with only changing positions 3-4x a night where as no lyrica and i can barely even get to sleep and end up waking up literally 8 or more times a night. Lyrica is also very expensive without a prescription and wprks with many people in different ways, so it does have its down falls. Best thing is to always push yourself and keep track of how you are doing, so if you notice either a significant increase or decrease in your activity, at least you can notify your primary care provider and try to work out solutions. Remember that doctors may not have much or any experience with this disease but if you work with them and document everything you are going through,they will be able to help you help them get a better understanding and better outcome for your visits and health

8/14/17 by James 950

Don’t give up. See a specialist like Dr. Feigenbaum.

10/29/17 by Karen 2500

Find a good GP Doctor. Needs to be willing to refer to experienced Pain Specialist

1/20/18 by dhedge42 2500

Do your research, everyone is different but chatting to people can help & you have options

6/18/18 by MissLeanneM 1700

Step back, breathe, research, and find a support group. See only doctor's that understand them fully. Do not waste you emotions on any doctor that tells you it is in your head. When trying to find a drug that might work, only get less than 7 days worth, you can waste a ton of money on things you throw away. Read all possible side effects on line before fill in your script. I would have attempted the clean eating lifestyle change, or a more paleo diet first. Food triggers inflammation which triggers pain. I would have had my whole spine MRI'd to look for other issues with nerves, all rare of course.

6/18/18 by Ze 2520

Research your condition thoroughly and listen to your own body pains

6/19/18 by Debbie Dronfield 2500

Seek a TC doctor as soon as you can to seeif it is symptomatic

6/19/18 by Lynn 2500

read the book by Dr Terry Wahls and begin to look within to reduce symptoms

6/22/18 by Julie 1600

Do as much research as you can. This is your body and it is up to you to become an “expert” on your condition. Finding a doctor or pain management that is supportive is very important. I have been really lucky with my medical care. I bring all of the paperwork I have on Tarlov Cyst to my doctors and leave them copies of it. I ask them to do their research before making their diagnosis.

11/30/18 by Connie 1740

1. Use doctor Google. 2 find a support group, 3. Stay away from shots in your spine, therapy that adjust the spine, and read all information of medicines the doctor's will throw at you. 4 stand up for yourself. 5 allow only a doctor that specializes in the Tarlovs touch you. You have maybe 5 total to choose from. 6. Learn how opioid and other drugs can trick your system into thinking you are in pain. 7. Start a gluten free lifestyle.

12/9/19 by Ze 1500

Research and connect here: https://www.tarlovcystfoundation.org/ https://rarediseases.org/rare-diseases/tarlov-cysts/

12/9/19 by Jess Carhart 2500

To be referred to the proper Doctor/Doctors who have the knowledge to treat this rare disease. My advice kept me going through a revolving door, costly out of pocket expense, time not well managed and it is ONLY I who advocated for myself in finding the right Doctor.

12/15/19 by Pam 1700

Please be seen my a neurosurgeon that knows about TCS Mr Casey or Mr Chopra in UK

7/22/21 by Michelle Tamplin 2500

Търпение, сила и разум

7/23/21 by Моника 800

As said before, patients have to educate themselves and read scientific studies. But also it is advisable to join suppert groups and/or foundations who support symptomatic Tarlov cysts patients.

7/25/21 by SOSNL 2500

Lees je goed in, praat er over met je omgeving, leg het je omgeving uit en probeer te accepteren dat je leven er anders uit gaat zien.

7/26/21 by Founder SOSNL 2500

Join a Tarlov Cyst Facebook group. You will get more education, advice and support from these groups than from most doctors.

7/26/21 by KetoGma 2500

Keep calm and search for doctors how really understand o out the condition

10/25/22 by Tania 2500

Translated from spanish Improve translation

I would like that the doctors will be informed more about these cysts and the symptoms. In general say they don't give symptoms.

3/24/17 by Simona. Translated

Translated from french Improve translation

First of all check with people diagnosed with, you will probably get more response from your doctor. Be followed by a centre anti pain, as well as by a psychologist for the acceptance of the disease and to evacuate a maximum of frustrations. Finally, keep hope , accept it is not to be resigned. Learn to appreciate every little moment of happiness daily.

9/30/17 by . Translated